Update 04.03.12

There is so much going on I really don’t know where to start. The “swan effect” is in motion, meaning everything looks calm and peaceful above the water, but below water level it’s chaos peddling and pushing forward… And no know knows this except Andia and I as we act like all is calm.

During the day we keep Chiane occupied and keep her busy, having fun and making jokes. At night time, it’s a completely different matter. A lot of correspondence going on, research, bouncing information around and think tanks going on.

We have made some radical changes to Chiane’s medicines we use (specifically relating to side effects to minimise the Thiotepa side effects) and it made a massive improvement. One thing that still have the doctors speechless is the fact that she has no mouth sores.

Chiane is still on feeding, but this time she is on both Nutrition feed going through her PEG to her gut, and TPN (Total parental nutrition) which are given IV through her bloods. We are hitting it from both sides. We also increased her feeding to her gut compare to last time and her gut is holding it so far. The more nutrition she gets in the better energy she has. We made a lot of changes, one is that the nutrition we use has the protein already broken down in to smaller molecules meaning her gut does not have to “digest” the protein in the nutrition. The protein can only be absorbed and it makes it easier on her gut. A lot of changes, but all small changes that has a massive positive effect on her.

We have made changes in the cream we are using. Last time on day 6 after chemo she would cry if we touch her, now, it’s only “sensitive” in a few spots.

Chiane is doing very well in herself. She is coping so much better with this round of High dose Thiotepa compare to the previous round (like for like, day to day comparison). It’s still early days, towards the end of next week we will know the true effect. We will then establish if our work paid of or not. The Thiotepa will hit her hard, there is no way getting around it, but we are working very hard to reduce the side effects. She has the off day, yesterday for example Chiane vomited 14 times. Today, she was not sick once. Small changes is what we do the whole time. It is these small changes all the time that has radical positive effects.